Hi Aquariusgirl,
My multivitamin, which I've been taking for over ten years, has 200 mcgs of selenium, but I can only afford to take 1/3 dose daily, so I am getting about 67 mcgs. I don't eat Brazil nuts and only use a little garlic in cooking once in awhile, so I'm not getting much in my diet. The soil where I live is low in selenium.

I once did the Zhang Protocol for my Lyme Disease for six months, which is loaded with garlic to the point where my husband would not come near me, and my hair did not fall out during that time.

I am glad you figured out what caused your problem and I hope it has stopped.

Freddd, if you are reading this, I did get a chance to examine a hair that fell out tonight under a magnifying glass. It was full length with a little knot-like white thing on one end, which I assume is the root.

Hi Aquariusgirl,
My multivitamin, which I've been taking for over ten years, has 200 mcgs of selenium, but I can only afford to take 1/3 dose daily, so I am getting about 67 mcgs. I don't eat Brazil nuts and only use a little garlic in cooking once in awhile, so I'm not getting much in my diet. The soil where I live is low in selenium.

I once did the Zhang Protocol for my Lyme Disease for six months, which is loaded with garlic to the point where my husband would not come near me, and my hair did not fall out during that time.

I am glad you figured out what caused your problem and I hope it has stopped.

Freddd, if you are reading this, I did get a chance to examine a hair that fell out tonight under a magnifying glass. It was full length with a little knot-like white thing on one end, which I assume is the root.

klutzo

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Hi Klutzo,

One of my favorite dishes is baked galic on some toasted multigrain bread. Of course if one is going to be social it's a dish best eaten with those around you with whom one is social.

The first is that the dosages are pretty high. In my experience, people with CFS (PWCs) frequently find that they can tolerate only much lower dosages at first, because of what seem to be die-off and detox symptoms.

The second is that methylcobalamin is one of very few substances in biological systems that is able to react with inorganic mercury to produce methylmercury. Methylmercury can readily cross the blood-brain barrier and enter the brain, where it acts as a neurotoxin and is very difficult to remove.
I am leery of high dosages of methylcobalamin in people PWCs who have been ill for several years, while they had amalgam fillings in their teeth, since they are likely to have accumulated a significant body burden of inorganic mercury while they were inhaling metallic mercury vapor from their fillings, and their glutathione levels were low, so that they could not detox it as well as normally.

I do not have documented proof that this is a problem, but I am aware of two cases in which PWCs who had significant mercury burdens received high-dose intravenous methylcobalamin, and experienced neurological symptoms shortly afterward, which persisted for some time. So I feel the need to express caution about this unless and until it is proven otherwise.

If you would like to compare, the most recent version of the treatment I have suggested for CFS is pasted below.

Note that the folate dosages are at the levels of hundreds of micrograms, and the B12 is at a dosage of 2 milligrams and is the hydroxocobalamin form, rather than methylcobalamin. Some people have had to start with much smaller dosages than those shown, because of the intensity of the symptoms that were provoked.

As I have noted in another post, Freddd's own case is different from those of people who have CFS as defined by the case definitions for it, which state that it is not a lifelong disorder, but is an acquired disorder. According to Freddd's descriptions of his illness, he has an inborn error of metabolism (IEM) that involves one or more mutations in the genes that code for the enzymes that process vitamin B12 within the cells. Based on Freddd's description of his experience, I suspect that he has a mutation in one or more genes that code for enzymes involved in the conversion of glutathionylcobalamin into methylcobalamin and adenosylcobalamin. He has found that he needs to take relatively high dosages of methylcobalamin and adenosylcobalamin to make up for this IEM, and that he cannot tolerate taking glutathione or its precursors. I think that makes sense in terms of the IEM that he seems to have. However, I suspect that very few PWCs have this same issue. While Freddd's treatment may work for them, I think it is sort of an overkill, and I do have the two reservations about it that I have described. I guess some of the people who have CFS are trying it, so we should have more information about how it works for them as time goes on. If I had CFS myself, though (which I don't), I would consider these reservations before deciding whether to try it.

All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

I've done Rich's protocol for nearly two years, though have recently substituted methylcobalamin for hydoxy (the activated B guard). I've not improved, I'm afraid, in fact am currently in my worse relapse ever which has lasted 6 months so far (unlikely to be due to this protocol though).

I got the Folapro and Actifolate from www.nutricentre.com, the B12 Guard from naturalnutrionals.com (couldn't find it in UK), and the phos serine from iherb (much cheaper than in UK). It seems the only place to get the General Vitamin is Holistic Health - it's very expensive and postage to UK was over 20. I think Sarah Myhill may suggest an alternative.

I'm sorry to hear that it hasn't helped you and that you're also in your worst relapse ever. Been there, done that....over and over..and will no doubt do that again. It is horrid and I send you a big. I really hope your health will improve soon.

Just maybe my sudden enthusiasm to try yet one more approach to attack this lurgy wasn't such a bright idea.

I've done Rich's protocol for nearly two years, though have recently substituted methylcobalamin for hydoxy (the activated B guard). I've not improved, I'm afraid, in fact am currently in my worse relapse ever which has lasted 6 months so far (unlikely to be due to this protocol though).

I got the Folapro and Actifolate from www.nutricentre.com, the B12 Guard from naturalnutrionals.com (couldn't find it in UK), and the phos serine from iherb (much cheaper than in UK). It seems the only place to get the General Vitamin is Holistic Health - it's very expensive and postage to UK was over 20. I think Sarah Myhill may suggest an alternative.

Some people seem to be helped - it's probably worth trying.

Good luck!

Jenny

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Hi, Jenny.

Thanks for reporting on the lack of results that you have experienced from the Simplified Treatment Approach (I'm serious!).

I'm very sorry that your health hasn't improved on this treatment. Here are some possible reasons why:

1. Perhaps you don't have a partial block in your methylation cycle. I think this is possible, but if you have the symptoms of ME (CFS), I think it's unlikely, based on the testing that has been done so far. Testing is available to determine this, either directly, using the methylation pathways panel from Vitamin Diagnostics in the U.S. or the European Laboratory of Nutrients in the Netherlands, or indirectly, using a urine organic acids test that includes both methylmalonic acid and formiminoglutamic acid, such as the Genova Diagnostics Metabolic Analysis Profile.

2. Perhaps your body is low in one or more of the vitamin or mineral cofactors for the methylation cycle and related pathways. These include the B-complex vitamins, zinc, magnesium, manganese, copper and selenium. One possible cause of deficiencies in some of these cofactors is kryptopyrroluria, which Dr. Klinghardt has reported finding in a large fraction of his patients. Testing is available to check for these deficiencies, and supplementation of deficient cofactors should help if some are low.

3. Perhaps your body is low in the amino acids needed to feed this part of the metabolism, especially methionine, serine, glutamine, cysteine and glycine. This one appears to be a fairly common problem in ME (CFS). I think there are two reasons. The first is tha the digestive system in many cases is not working well for a variety of reasons, one being the partial methylation block and glutathione depletion themselves (sort of a vicious circle), so that the digestion of protein and absorption of amino acids from the gut are below normal. The second reason is that because of the partial block in the Krebs cycle that results from glutathione depletion, carbohydrates and fats are not used for fuel as well as normal, so that the cells burn more amino acids for fuel. Thus, the amino acids levels in the body decrease. Perhaps taking a combination of free-form amino acids will help with this. In extreme cases, in which the gut is just not able to absorb amino acids, intravenous treatment with amino acids may be necessary. Some PWCs have had this treatment, to advantage.

4. Perhaps the levels of toxic heavy metals (such as mercury) are high in your body. These metals are known to be able to block some of the enzymes in the methylation cycle and related pathways. In such cases, it may be necessary to take measures to lower the body burdens of the toxic heavy metals before it will be possible to normalize the methylation cycle operation. I think that some of the newer agents, such as OSR#1 and MicroSilica might be possibilities for helping with this, based on reports from Dr. Klinghardt.

Those are the possibilites as far as I know now, based on study of some of the cases in which there was no response to this treatment. It appears that over two-thirds do respond, but you are certainly not alone in not experiencing a response, and I am very interested to find out the causes of non-response. If you can shed any light on whether any of the above apply to your case, I would appreciate it.

Mandimart.co.uk carries most of the yasko stuff and postage is free with purchases over 35 quid.

I've been doing yasko/simplified for 3 years..and I'd say I'm about 30 percent improved. I think it's key to my recovery but not sufficient in and of itself.

My plan was to get methylation up and running before tackling anti virals...since you need methylation to suppress viral DNA.

Rich may be able to comment on this ...but my sense is a lot of folks wind up on antivirals forever ..or years and years.. because their own immune systems cannot keep viruses in latency. I note that someone reported on here recently that Nancy Klimas said she was concerned about patients getting resistant to the drugs.

My Natural Killer Cell activity has certainly improved on this protocol, but I'm not sure I understand the correlation between improving methylation and T-cell, B-cell, NK cell activity.

I've seen global improvements with this protocol. Better sleep almost immediately. Body temp came up. Periods normalised. Less fatigue. And eventually and I do mean eventually......better.cognitive function.

Problem is it's been really slow..Plus, I do think you need some elements of the full yasko program that aren't in the simplified program. I think you need to track minerals, and you need binders and maybe chelators to grab and mop up all the toxins and metals.

and then there's the casein-free, gluten-free diet to heal the gut and protect against excitotoxicity.

There are just so many moving parts to this protocol.. but if you read this forum, you realise that it really does seem to be that complicated.. You gotta fix the gut, fix the immune system, heal the brain, get the toxins, metals out and attack the viruses and other pathogens.